Before Natalie Moffat died in March this year, she asked her partner Gavin Starling to be an advocate for others living with brain cancer – as he had done for her during her eight-month illness.
This is now Starling's focus in life with his ultimate goal to make sure brain tumour symptoms are more widely understood.
To mark International Brain Tumour Awareness Week, Gavin has started working with a group to set up a Trust that offers New Zealanders diagnosed with a brain tumour and their families a platform where they can find expert information, educational resources, social networks and emotional support.
Starling works as a sleep physiologist at Whangārei Hospital. Like many people, he and Natalie were completely unaware of all the symptoms of a brain tumour.
This lack of awareness is why he believes brain tumours often go misdiagnosed until it's too late, and could also account for a low rate of people seeking second opinions.
Typically, people associate severe headaches and migraines as the key signs of brain cancer, but there was a much wider range of symptoms.
Because of the location of Natalie's tumour, her memory and cognitive function were affected.
With hindsight, Starling says there were a lot of subtle signs something wasn't quite right with Natalie.
But the isolated incidents seemed harmless at the time, such as forgetting where she had put her keys and having a couple of scrapes in the car.
The real alarm bells came while she was at work – when she forgot how to do simple tasks, such as finding a folder on her computer.
One day Natalie rang Starling while she was driving and, when he asked her where she was going, she couldn't remember.
He asked her what road she was looking for and she said she didn't know what country she was in.
They realised something was seriously wrong and went straight to their GP.
Due to the regular incidences of confusion, her GP did a series of tests looking for Alzheimer's which came back negative.
Her GP then asked her how work was going and when she said she hated it, the GP put all the confusion down to stress and told her to go home and rest for three weeks.
Starling said neither of them felt satisfied with the diagnosis of stress.
"As soon as we left the surgery Natalie said she felt like she was being dismissed as a middle-aged, menopausal woman, and that's exactly how she was treated," he said.
They went to the Emergency Department at Whangārei Hospital the next day. Tests were done and a lesion was found on her brain. That was August 17, 2017.
She was diagnosed with Glioblastoma Multiforme IV (GBM), the most aggressive form of brain cancer, which Starling said was known as 'The Terminator'.
Before they received the news, Natalie specifically asked not to be informed of how long she would have or exactly what the diagnosis was.
"Looking back, it was the best decision she could have made. There was a lot of pressure to make Natalie aware that this was serious and of the prognosis.
"But I think those eight months were far better for her because she didn't have to carry that burden and we made sure there was laughter every day. Natalie thought she was having a wonderful time and was being spoilt. She was able to live every day as it came," he said.
Each night when Natalie went to bed, he would spend hours researching the disease and quickly found that there was a huge gap in national information on brain cancer in New Zealand.
Instead, he relied on data from Australia and the United Kingdom, where there was a wealth of information and support available.
He said the UK Brainstrust was particularly well set up, with advocates available to attend appointments and speak on your behalf.
Starling said this is essential because sufferers of brain cancer and tumours are often confused and can't speak for themselves or understand what they're being told. The trust is a model for what he is planning to set up in New Zealand.
Their vision is for everyone with a brain tumour 'to feel less afraid, less alone and more in control' – exactly what he wants to achieve for New Zealanders.
The only community support he found in New Zealand was through GBM support groups on Facebook, where he was able to join forums and meet people online who knew what he was going through.
It was a space where he didn't have to explain himself or how he was feeling.
He said he used his medical networks to access advice and information on medication and ask questions the general public may never get answered or even know to ask.
This knowledge helped Natalie in the last few months of her life when she was often able to be pain-free.
"My big focus is raising awareness of the symptoms and spreading the word re listening to those who say, 'I'm concerned'. If you hear that from someone or you feel concerned yourself, don't wait around. Get a second opinion if you're not happy.
"This journey doesn't have to be a bad thing, but no one should have to fight to be heard."
Clinical director of Cancer & Blood Services at the Northland DHB Dr Vince Newton said glioblastomas were the most common high grade (cancerous) primary brain tumour in adults. They could also occasionally occur in children.
"As we see from Gavin's account of Natalie's illness, glioblastomas are for oncologists one of the most challenging cancers to manage.
"Because of the inherent nature of a disease affecting the brain significant effects on the individual's memory, attention and communication can occur, impacting ability to work, participation in social activities and on family relationships in profound ways."
Brain tumours may give rise to a large number of different symptoms, depending on their position in the brain and how quickly they are growing. These may include:
1– Headaches: these will be present in over half of patients and will usually have been present for some time. They may be worse in the morning and possibly associated with vomiting. It is important however to realise that most headaches are in fact not caused by brain tumours. It is important to discuss any persistent headaches with your doctor to clarify if there may be any concerning features.
2 – Seizures: a brain tumour may cause a variety of different seizures. Any new or unexplained seizures should be carefully assessed and investigated.
3 – Mental Changes: these may include certain forms of depression, confusion, memory loss and personality changes. Source: (http://www.familydoctor.co.nz/categories/cancer/brain-tumours-a-patients-guide/)